It’s been almost 2 1/2 years since I came down with this syndrome and still can’t walk and still have no feeling in my extremities. Is there anybody else that is or has been miserable for so long? I just think it would make me feel better if I knew that I was not alone. Thanks.
Hi GBSguy!
After a week and several different ER visits and seeing several doctors, I finally was admitted to hospital on June 04, 2012. After a day of testing and finally a Spinal Tap, I was diagnosed with GBS and IVIG transfusions were begun. I was in hospital/rehab facilities until October, 12, 2012. Came home in a wheelchair and using a walker some. Continued out-patient PT for 4 more mos, then went on a fitness program where I go as often as I want and at anytime I want. I am walking, albeit like a duck or a drunk. Out in very open spaces I still use a walker or cane to help with balance. After all of this I do not need a broken bone. I will be 73 in a couple of days so I don't work anymore, thank goodness. My family doctor and Internist did not know what was wrong with me and did not refer me to anyone else. With the help of my family, we kept going from one place to another until I got to a wonderful Neurologist who recognized what I had and sent me to hospital. later my internist apologized to me (he's about my age) and said they studied GBS in school, but he had only seen one other patient who had it. The medical field just does not know enough about this disease and needs to be updated on it. Most of the caregivers working with me had never heard of it and most of my therapist had to study up on it. I have been told to listen to my body and when I get tired, not to keep pushing, but to stop and rest. Also have been told that it could take years for a complete recovery or that I may always have some residual side effects. I am beginning to believe that I may have some permanent nerve damage in y feet even though I can walk and do drive some. I ontinue to have tingling and numbness in my lower legs and feet. Somedays are better than others. I have never given up and I am back writing, typing and playing the piano.In the middle of GBS recovery, I had to have a colostomy. So between the two conditions, I don't get out too much. I can go where I want, but feel safer close to home. It is a new life, but hey it is a life and I thank God for that.
Hugs & Blessings!
Kay